Coherence of Stroke Survivors' Lived Experiences and the Stroke-Specific Quality of Life Scale.

Importance: Physical, behavioral, and social outcomes after stroke are determined by the complex interaction of external states (eg, mobility) and internal states (eg, emotional distress). Improving these outcomes, collectively called health-related quality of life (HRQOL), requires their accurate measurement. Objectives: To identify important HRQOL constructs that are associated with poststroke recovery and assess whether the Stroke-Specific Quality of Life (SSQOL) Scale, which measures 12 physical and psychosocial outcomes, adequately captures HRQOL for survivors of stroke. Design, Setting, and Participants: This qualitative study was conducted between October 1, 2023, and December 31, 2024, at 2 US comprehensive stroke centers. Stroke survivors and caregivers participated in 2 consecutive focus group sessions: the first on physical well-being and the second on emotional well-being. All stroke survivors completed the SSQOL survey. Exposures: Physical and emotional well-being in recovery after stroke. Main Outcomes and Measures: Identification of themes regarding HRQOL constructs and their coherence with the SSQOL Scale. The framework method was used for qualitative analysis, and joint displays were used to assess coherence between qualitative themes and SSQOL Scale domains. Results: A total of 41 participants (median age, 55 years [range, 27-77 years]; 22 women [54%]) were recruited nationally; the cohort comprised 30 stroke survivors and 11 caregivers. Qualitative analysis demonstrated 5 key HRQOL constructs crucial to physical and emotional well-being in recovery. Reduced physical functioning and reduced social participation were key external states associated with recovery. Loss of independence, feelings of shame, and the fear of uncertainty were key internal states associated with HRQOL. This analysis confirms that the SSQOL Scale adequately captures the external states associated with HRQOL (reduced physical functioning and reduced social participation). However, internal states were only partially captured by SSQOL Scale. Conclusion and Relevance: This qualitative study of lived experiences among stroke survivors and caregivers suggested that internal states shape recovery but were not fully captured in a validated, widely used HRQOL assessment, highlighting a potential gap that may be unaddressed in routine poststroke care. Future studies are required to understand which combination of validated assessments may provide more comprehensive assessments of HRQOL during poststroke recovery.